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Monday 27th saw the official launch of EPF’s campaign on Access to Healthcare at the European Parliament. LUPUS EUROPE has been involved in the Working group for this project and the working group met on Tuesday to discuss Monday’s meeting and the next steps and the work which remains ahead. There is still a lot of work to do on this very important subject.

Photos from the kick off meeting at the parliament are visible on EPF’s facebook page here.

The following article is copied from EPF’s web page on the campaign.

Campaign on Access to Healthcare

From January 2017, EPF carries a flagship campaign on Access to Healthcare. This theme is a long standing priority for EPF and its membership, and is at the heart of the vision of the organisation.

Under the tagline ‘Universal Health Coverage For All’, the campaign is an opportunity to raise awareness about the barriers patients face in accessing healthcare, and to build on current political momentum – including the UN Sustainable Development Goals for health – to foster more EU cooperation on access to healthcare.

The EPF Working Group on Access drafted the following overarching strategic objective for the campaign:

The EPF Access campaign will contribute to make universal access a reality for EU patients by 2030, through defining and promoting concrete actions, in concert with the health community, to which decision makers need to commit, to ensure we achieve the Health SDGs by 2030.”

EPF has used use its prior work on access to shape the messages of the campaign; in particular looking at the definition of access to healthcare, and the statement on pricing and reimbursement of innovative medicines.

Practical info

The one-year campaign will be officially launched on 27 February at the European Parliament, in Brussels. The event – co-hosted by MEP Kateřina Konečná (GUE/NGL, Czech Republic) and MEP Andrey Kovatchev (EPP, Bulgaria) – will be an opportunity to present the campaign and to discuss what actions should be taken to achieve Universal Health Coverage at European level.

Rationale – Why a campaign on access?

Disparities in access to healthcare predate the financial crisis in Europe, but against a background of austerity measures and falling healthcare spending in many Member States since 2009, inequalities have been made worse. Access to care is affected by austerity policies in response to the economic crisis, such as cuts in healthcare budgets and in insurance coverage, increased fees and co-payments, and cuts in social protection measures.

At the same time, healthcare systems are facing increasing demands as a result of demographic change. As the population ages, the number of patients with chronic diseases is growing. Patients who developed a chronic disease at a younger age are also living longer, thanks to modern medical treatments. Patients with chronic diseases develop specific needs which the healthcare systems need to adapt to.

Patients across the EU are reporting multiple barriers to access to healthcare, whether it’s not available, not adapted to needs, or not affordable. EU Member States need to overturn the current trends of short sighted decisions on investment in healthcare, and commit to realising universal access by 2030 by taking concrete steps. EU Member States need to achieve universal health coverage and improve access to healthcare by 2030 according to the UN Sustainable Development Goals.

Contact

If you have questions about the campaign, don’t hesitate to contact us!

  • For policy-related content:

Katie Gallagher – Policy Adviser

  • For dissemination/communication activities & material:

Laurent Louette – EPF Communications Officer

Sara Gayarre – EPF Communications Assistant

 

 

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✅ Yesterday Lupus Europe took part in the DORIS+ meeting in London, alongside clinicians, researchers and patient representatives working on a definition of deep remission in #SLE.

🌟 Lupus Europe was wonderfully represented by Jeanette Andersen, Chair of the Lupus Europe Board, Francesca Marchiori, Lupus Europe Board and PAN Member, Blanca Rubio, PAN Member and Zoe Karakikla-Mitsakou, Lupus Europe General Secretary.

🦋 This continues Lupus Europe involvement in the work on remission in lupus, building on the original DORIS initiative, where Lupus Europe also contributed.

🤔 But what is DORIS?

DORIS stands for Definitions Of Remission In SLE. It helped establish a clinical definition of remission in systemic lupus erythematosus.

🐠 DORIS+ builds on that foundation and explores the concept of deep remission.

💁‍♀️ Since the original DORIS definition was published, emerging evidence has suggested that a deeper state of remission may be within reach for at least some people with lupus. DORIS+ aims to better define what that could mean.

This matters because remission is an important concept for research, clinical care and people living with lupus.

🦋 Lupus Europe is proud to be part of this important taskforce alongside many lupologists and researchers including Prof. Laurent Arnaud, Prof. Ronald van Vollenhoven, Prof. Zahi Touma, Prof. David Isenberg, Prof. Mariele Gatto, Prof. Ioannis Parodis, Prof. Eloisa Bonfá, Prof. Frédéric A. Houssiau, Prof. Andrea Doria, Prof. Ricard Cervera and Prof. Maarten Limper.

😃 We will keep you updated!
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☀️ 𝗨𝗩 𝗹𝗶𝗴𝗵𝘁 𝗮𝗻𝗱 𝗹𝘂𝗽𝘂𝘀: 𝘂𝗻𝗱𝗲𝗿𝘀𝘁𝗮𝗻𝗱𝗶𝗻𝗴 𝘁𝗵𝗲 𝗱𝗶𝗳𝗳𝗲𝗿𝗲𝗻𝗰𝗲 𝗯𝗲𝘁𝘄𝗲𝗲𝗻 𝗨𝗩𝗔 𝗮𝗻𝗱 𝗨𝗩𝗕 𝗺𝗮𝘁𝘁𝗲𝗿𝘀.

Ultraviolet light is one of the components of solar radiation. In lupus, UV exposure can contribute to 𝘄𝗼𝗿𝘀𝗲𝗻𝗶𝗻𝗴 𝘀𝘆𝗺𝗽𝘁𝗼𝗺𝘀 𝗼𝗿 𝘁𝗿𝗶𝗴𝗴𝗲𝗿𝗶𝗻𝗴 𝗳𝗹𝗮𝗿𝗲𝘀 in some people.

💁‍♀️ That is why we are launching our #lupusuvprotection campaign: to raise awareness of the impact UV light can have on people living with lupus, especially during summer.

🦋 Photosensitivity is one of the most common manifestations of systemic lupus erythematosus. In the Lupus Europe Living with SLE in 2020 survey, 𝗽𝗵𝗼𝘁𝗼𝘀𝗲𝗻𝘀𝗶𝘁𝗶𝘃𝗶𝘁𝘆 𝘄𝗮𝘀 𝗿𝗲𝗽𝗼𝗿𝘁𝗲𝗱 𝗯𝘆 𝟲𝟴.𝟱% of respondents.

But UV-related lupus symptoms do not always affect only the skin. UV exposure has also been associated with systemic symptoms such as 𝗳𝗮𝘁𝗶𝗴𝘂𝗲 𝗮𝗻𝗱 𝗷𝗼𝗶𝗻𝘁 𝗽𝗮𝗶𝗻, and may contribute to 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗮𝘁𝗶𝗼𝗻 in some people.

So what is the difference?

🔴 𝗨𝗩𝗕 𝗿𝗮𝗱𝗶𝗮𝘁𝗶𝗼𝗻:
🔸 Is mainly associated with sunburn.
🔸 Its intensity fluctuates during the day.
🔸 It is usually strongest around the middle of the day.
🔸 It mainly affects the outer layers of the skin.

🔴 𝗨𝗩𝗔 𝗿𝗮𝗱𝗶𝗮𝘁𝗶𝗼𝗻:
🔸 Penetrates deeper into the skin.
🔸 Is associated with skin ageing.
🔸 Its intensity is more constant during the day.
🔸 It can penetrate clouds and windows.

🌡️ 𝗜𝗻𝗳𝗿𝗮𝗿𝗲𝗱 𝗿𝗮𝗱𝗶𝗮𝘁𝗶𝗼𝗻:
🔸 Is perceived as heat.
🔸 Feeling less heat does not necessarily mean there is no UV exposure.

‼️ This is important because UV exposure can still happen even when the sun does not feel strong. UVA rays can pass through clouds and some types of glass, which means UV protection may still be relevant on cloudy days, near windows, while travelling by car or during everyday activities.

Although not everyone with lupus is photosensitive, people living with lupus are encouraged to discuss UV protection with their healthcare team and to learn what protective measures are appropriate for them.

Learn more through #Lupus100:
f.mtr.cool/lptcxwpubz

You can also ask #lupusgpt or #easylupus questions about lupus and UV light:
f.mtr.cool/nfccvjbbep
f.mtr.cool/clxgzteshl

Information on Lupus100 is available in several languages:

🇩🇰 f.mtr.cool/lkmkxyanqw
🇩🇪 f.mtr.cool/jmyfwcgsae
🇪🇸 f.mtr.cool/kdixsnubvi
🇬🇷 f.mtr.cool/dpqkzkejog
🇫🇷 f.mtr.cool/lwhtfzpnte
🇮🇹 f.mtr.cool/utsezhzrqp
🇳🇱 f.mtr.cool/sbfwktzpdr
🇷🇴 f.mtr.cool/xbcdhkqyud
🇫🇮 f.mtr.cool/hkfvtmjobx
🇺🇦 f.mtr.cool/cgpmlevqlb

#lupusuvprotection
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☀️ #heatwave can affect your health, especially if you have #lupus.

The WHO notes that hot weather can exacerbate existing medical conditions and that people with chronic illness may be more vulnerable during periods of extreme heat.

Has your doctor ever spoken to you about how to stay safe during extreme heat?

Reliable information can help you plan ahead and protect your health.

Before and during a heatwave:

✅ Plan essential outdoor activities for cooler hours
✅ Stay in the shade and keep indoor spaces as cool as possible
✅ Drink water regularly
✅ Avoid alcohol and limit sugary or caffeinated drinks
✅ Protect yourself from UV light if you need to go outside
✅ Check how your medicines should be stored
✅ Seek medical advice if you experience unusual symptoms or if symptoms persist

❓ Questions about lupus, UV and heat?

Explore reliable lupus information through #Lupus100, #lupusgpt or #easylupus. Free, multilingual, anonymous tools and resources, validated by lupologists and patients.

Save this post and share it with someone who may need it this summer.
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🎥 Missed our #EULAR2026 recap webinar?

The recording is now available on YouTube.

In this session, Lupus Europe volunteers bring back some key lupus-related learnings from EULAR 2026 from fatigue, pain & lived experience, to LupusGPT, access, youth co-creation and new research directions.

A huge thank you again to everyone who helped make this webinar possible.

Watch here:
f.mtr.cool/ncqeapqfjt
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🎥 Missed our #EUL
LUPUS EUROPE Uniting people with Lupus throughout Europe
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